Cousin & wife

With their engagement, first cousins Fadi and Laila challenge our inbred ideas about inbreeding

A group of volunteers sits in a circle of chairs in the lunch room of The Red Cross in Halifax. They're all activists for different kinds of equality: an environmentalist; a social worker; a children's rights
activist; a gay rights advocate and a youth worker with the YMCA named Fadi.

Fadi, 28, is a Kuwaiti-born Palestinian refugee. At the YMCA, he helps other immigrants get settled in Canada.

The group has been assembled to coordinate an annual symposium. Most of the volunteers, Fadi included, have done it before, and all of them are getting caught up on each others' lives.

In a team-building exercise, Fadi writes on a piece of paper that he is getting married, and then puts it in a hat with anonymous facts about the other volunteers. Someone pulls Fadi's piece of paper out of the bag, and tries to guess who wrote it. Fadi remains nonchalant while they make two or three wrong guesses. When the paper gets matched back to Fadi, the group surges with excitement for him.

Lisa, who has known Fadi for four years, gets the first question. "So who is she?" she asks, beaming.

Fadi responds with pride and excitement, "She's my cousin."

The room goes silent. A couple people try to stutter a response. They wait for a punch-line. It never comes. The excitement drains from the room. Fadi's smile is gone, too.

"It's normal where I come from," he says.

• • •

Fadi and his fiancee, Laila, share one set of grandparents. Fadi's mother and Laila's father are siblings. But they don't share much else.

Fadi's thick black hair and dark irises are indicative of his Palestinian heritage, although his face is defined by narrow eyes that he inherited from his Chinese grandmother. Heavy lower eyelids reinforce the impression that he is completely relaxed, even sleepy.

He was born in Kuwait to a family of Palestinian refugees. They later moved from Kuwait to Jordan as refugees from the Gulf War. They've lived in Halifax since 2006, when they immigrated from Jordan.

Laila understands Arabic, but doesn't speak it. She was raised in the suburbs of Illinois in a predominantly Muslim community and is studying dentistry in Chicago.

Talking about his engagement at a cafe, Fadi wraps his hands around a cup of warm green tea. He leans forward on the table, smiling, and describes Laila. "She wears a scarf," he says, indicating a hijab. "She's religious, a little bit. More than I am. She went to an Islamic school."

Fadi and Laila came from different worlds, but there is one thing they had in common: neither wanted to marry their cousin.

• • •

James Boxall is a professor of human geography at Dalhousie University, and director of Dal's Geographic Information Centre. In one of the lectures for his introductory human geography course, Boxall uses inbreeding to illustrate how humans are influenced by geography. It's all a matter of isolation. "Back when the Golers were hot in the news, 20, 25 years ago, I started to wonder, 'Why would such a thing occur?'" says Boxall.

The Golers are the most infamous case of incest in Nova Scotian history. In 1984, a 14-year-old girl from the Goler family went to the police, revealing that incestuous sexual abuse ran rampant throughout her family. An RCMP investigation found that the abuse had taken place over many generations in the small community on South Mountain, near Kentville. Hundreds of charges were laid against 16 adults.

"I started thinking about the isolation in that particular part of the province. Why would a group of people there be different? Regardless of the morality of it, or the genetics of it, what would lead them to that particular action? And then the isolation issues came up." In the 19th century, it could take three days to get from Kentville to Halifax, a drive made in 90 minutes today.

Boxall describes not only geographic isolation, but also cultural isolation and isolation of ideas, which create societies of dogma and paranoia, pointing to Nazi Germany as an example. He surmises our isolated society has developed inbred ideas about inbreeding. "I find isolation intriguing because the things that can result from isolation---of any type---are actually amazing. Sometimes very horrible."

Boxall lived in Kentville through the mid-2000s. He recollects that every winter he would notice a startling number of people with developmental challenges and physical disabilities. "You'd notice it at Christmastime, because everybody would be around shopping at Christmas. I just went around and I went 'Oh my god.'

"I remember saying to my friend, 'Do you notice this,' and she said, 'Oh yeah, it's when they come down off the mountain for Christmas shopping.' OK, that's a really bad thing to say, but the curiosity in me said 'Is there any truth to that?'"

Compared to the general population, a child born to cousins has a slightly higher risk of being born with a genetic disorder, but the problem becomes greater over many generations. Recurrent inbreeding causes the gene pool to become smaller, increasing the risk of genetic disorders.

"Your gene pool, theoretically, would become a funnel," Boxall says, joking that eventually "you're gonna give birth to a protozoa."

Boxall argues that the taboo may be genetic as well. He hypothesizes that humans may have evolved to have an intuitive aversion to inbreeding. "It's almost like we know," he says. "It's almost like something inside us says, 'If you marry close within your family
---it's not a good idea.'"

The taboo is so strong and deep-rooted that it can defy logic or, as Boxall says, it leads to inbred ideas about inbreeding. Not every small, isolated community is a South Mountain: Many indigenous populations, such as the Inuit, actively avoid cousin marriage and encourage genetic diversity based on traditional knowledge. And a situation like the Golers---which can be abusive, and may give rise to genetic recessive diseases---
is different from when two people fall in love who happen to be cousins.

In Fadi and Laila's case, their marriage does not constitute incest, nor will those cousins birth a protozoa. While most people have eight great-grandparents, Fadi and Laila's children would have only six. This means that they carry a slightly elevated risk of having a child with a recessive genetic disorder, but they will also bear the full burden of the socially constructed stigma that they are doing something wrong.

• • •

Fadi is the breadwinner for his mother and five younger brothers, and works two jobs to take care of them. He coordinates programs at the YMCA Newcomers' Centre and waits tables at Athens Restaurant.

He says that in the Middle East, cousin marriage is largely accepted culturally, though the Qur'an encourages marriage outside the family. With that in mind, Fadi spent years looking for someone to connect with, but had little success.

Until last year, Fadi had only ever seen Laila at occasional family get-togethers. "My mom talked to me about it a few years ago," says Fadi. "She was like 'Your cousin: what do you think?' I was like, 'No, no, no, I'm against it.'"

But last year Fadi went to Chicago to visit his relatives. "I saw her, and we talked, and we clicked. And I was like, 'OK, let's go for a date,' and we went for a date.

"We went to Starbucks actually, and I don't drink coffee," Fadi says, laughing, "and I'm not a fan of Starbucks, too, but I think that's what she likes." For the first time, they were talking to each other as potentially more than cousins.

Before Fadi left Chicago, he and Laila had gone on three dates. When he got back to Halifax, they were talking on the phone every few days.

"I decided, 'You know what, I've been through a lot and I'm 28. I want to have kids one day and I want somebody to have kids with. I want a great mom to be in my life.'

"I asked her over the phone, 'If I come and propose to you, will you say yes?' And she said, 'I'll be on board with you.'"

Despite Laila's Islamic upbringing, American stigmas discouraged her from the idea of cousin marriage. Even after the proposal she joked that she was opposed to the idea.

"She had a lot of people who came and proposed," says Fadi. "She's been having them for the last three years, having people come and propose, and she's been saying 'No.' And people that are really more educated than I am, and more rich than I am, and more religious---and she wanted somebody religious---and then when it came to me, she said 'Yes.'"

• • •

Susan Cann sat in the office of the IWK's head pediatric neurologist, Peter Camfield, with her teenage daughter, Lesley-Anne Doucet. Having run a series of tests on Doucet, Camfield was trying to reassure Cann there was nothing wrong.

Infuriated, Cann threw a pen to the ground near Doucet's chair.

"Explain this," she said. "Why can't she look down, see that pen and just reach over and pick it up? Why does she have to move her head all around to see this pen?"

Recounting the story of her daughter's illness in a phone call, Cann says the tossed pen triggered a instant reaction. "Well, it didn't take half a second. That man jumped up like lightning went up his behind."

Camfield immediately made calls to different labs to schedule CAT scans and blood work. He took Doucet into the hall to do basic movement tests. "I'm thinking, 'OK, what's going on?'" says Cann. "And he said to me, 'I can't tell you what this is, but I can put you in touch with the right people that will help you through it, because,' he said, 'if it's what I think it is, it's fatal.'"

Doucet had a recessive genetic disorder called Niemann-Pick Disease. Because of the mechanics of such disorders, they can arise insidiously where inbreeding is common. Doucet's community, Yarmouth County, was home to dozens of cases of Niemann-Pick throughout the 20th century.

A recessive genetic disorder occurs in a child because they receive a matching faulty gene from both their mother and their father. If a child receives the gene from only one of their parents, then they silently carry and pass it on to the next generation.

In communities where inbreeding is common, recessive genes can spread to many members of the community before children with the disorder start being conceived from two parents who are distantly related to each other. By the time people notice something happening, the genetic groundwork is done, and extremely rare diseases can affect dozens of people in a small community. This is known as a founder effect.

Founder effects are found in isolated communities around the world. In Quebec's Saguenay region, one out of every 1,500 people is diagnosed with autosomal recessive spastic ataxia, a genetic disease that causes muscle spasms, eye twitching, speech impediments and physical deformities.

The entire Amish population in the United States is descended from a few hundred settlers. In one Pennsylvania community, any two Amish people share as much of their genetic code as second cousins, and many rare genetic diseases are common in the Amish communities.

In studies focusing on the Middle East, the issue becomes political. One Israeli report found that inbreeding in Palestinian populations had caused extremely high concentrations of recessive disorders. Nicolai Sennels, a prominent Danish psychologist and anti-immigration activist, has written that intensive inbreeding has made Arabs too aggressive to integrate into western society.

In a review of the history of cousin marriage in the United States, Diane Paul and Hamish Spencer explain that American laws around cousin marriage emerged in the 19th and 20th centuries out of political classism. Cousin marriage in the United States was associated with immigrants and the poor, and as states began drafting marriage legislation, cousin marriage became an easy target for political lobbying. The same attitude persists today. In 2005, Texas passed legislation that banned cousin marriage in an effort to dissuade fundamentalist Mormons from settling in their state.

Lesley-Anne Doucet's parents are completely unrelated. Niemann-Pick disease became a significant problem in Yarmouth County, however, because of marriage between the descendants of Joseph Muise, a carrier of the disease who died in 1729.

Cousin marriage is closely associated with the stereotype of the American hillbilly, the butt of countless jokes. At the core of the inbred hick stereotype, however, is the reality of the genetic diseases that are proliferated by inbreeding.

Niemann-Pick causes mental deterioration which ultimately leads to dementia and death, mostly in children. As a preteen, Doucet would have no idea whether she received correct change at the store, even if she'd received none at all. Within a few years, she had to eat through a feeding tube. In 2003, when she was 18, she died.

"My child was very much ostracized, even after she was diagnosed, even after everybody knew. Kids are cruel," says Cann, remembering an incident where her daughter was assaulted on the way to school by a boy who lived across the street. "He beat her. He put her on the ground---and they were outside playing ground hockey---he took his hockey stick and he beat her, just because he just didn't like her, because she was different.

"I don't judge anybody," she says of cousins who marry. "We're not always able to help who we fall in love with. But, if they are people who are at all considering having children, this is not a nice and an easy thing to go through. It's just not.

"It isn't just about the two people who are in love and want to live happily ever after. There's a lot of other people and things to consider as well."

• • •

It's early March, and Fadi's finishing work at the YMCA Newcomers' Centre. In the small building's upstairs meeting room, Fadi clears markers and flip-chart paper off of the table, and fits them onto a bookshelf filled with art supplies and board games.

Fadi's almost done his last day of work before going to Illinois for 10 days, and he's getting nervous. The engagement party is less than a week away in Chicago and there are countless preparations to be made.

Fadi says that he's anxious about the party because Laila's side of the family makes him nervous. "Well, it's my side of the family too," he says, laughing, "but I don't know them as well."

He has another task to accomplish while he's away. He and Laila have both had blood and DNA tests done. While Fadi is in Chicago, they have to take the results of their tests to a genetic counsellor to find out if they're genetically compatible. A genetic counsellor could tell them whether or not their children would have a serious risk of inheriting faulty genes.

• • •

Jill Beis takes a binder off of a shelf above her computer and opens it to a page with 23 pairs of chromosomes that look like black-and-white photos of earthworms. "I like to use diagrams when I meet with families," she says. Light fills her fifth-floor office, spilling in through a wall of windows that look down over an atrium. Beis is a genetic counsellor at the IWK Health Centre.

"If we look at the general population," she says, "you say anyone in a pregnancy has a two to three percent risk of having a child with a birth defect or genetic disease, identified early at birth. And the risks to first cousins, who we would say are consanguineous mating, is three to five percent, unless there's a defined disease within the family."

To put the risk in perspective, first cousins have the same chance of having a child with a disability as women over 40 do.

"Once you go back past, say, third cousins, you're back to population risk. But, if there's a specific gene...if there's a founder effect in the populations, some of the people who marry and have kids with that disease might have been related four, seven generations back," says Beis.

Beis points at the black-and-white earthworms on the page in front of her, and starts explaining genetic coding. Everyone, she says, has around 30,000 pairs of genes. You get a copy of each from each of your parents.

A recessive disorder is caused when the copy of a particular gene you get from your mom and the copy you get from your dad are both faulty. If only one of the copies is faulty, you would remain unaffected and may quietly pass the faulty gene on to your children.

"I kind of describe genes as like a recipe," says Beis. "It has a list of ingredients and instructions, and at the end it makes something. If you have a deletion in your gene---if some of the ingredients in your list are missing, or the instruction set is missing---you're not gonna make that same product."

Among first cousins' children, the risk of a recessive disorder is only one to two percent higher than in the general population. However, that is not true for all familial relationships. Beis explains that in first degree relationships---between parents and children or brothers and sisters---the incidence of birth defects, developmental problems and intellectual issues rises to between 30 and 50 percent, though nobody has identified exactly why that is. The odds are also higher in regions where inbreeding is traditionally common.

Though cousin marriage is common in Palestine, Fadi and Laila have a lower risk of carrying faulty genes than most Palestinians because they have diverse heritages, with great-grandparents from China, Cuba and America, as well as the Middle East.

Beis has only been approached a few times with questions from cousins wanting to wed. She consulted one couple who didn't know they were cousins because someone had had an affair, and they found out only after getting engaged. She's also received the question from people from cultures where cousin marriage is more common.

The first thing Beis did when she was approached for the first time was to investigate the legality of cousin marriage. She found out that it is legal to marry your cousin in Nova Scotia, and then had to check with her client's church, because the priest wasn't sure if he could wed them. She found out that was OK, too.

"Usually the question is 'Do I have a higher risk of having a child with problems because I'm going to marry my first cousin?'" says Beis.

To answer that question, she looks for specific illnesses in the family tree and ethnic heritage. If she finds anything suspicious, she can recommend that the couple get tested to check their genes for specific disorders. Otherwise, she says, "you just recommend the basic things for everyone: healthy eating, exercise, don't smoke, don't drink, take folic acid."

A week and a half after he nervously left Halifax, Fadi is home again, elated.

Though the trip was hectic, Fadi said that the party was perfect. He greeted guests and chatted with relatives. His uncle, Laila's father, announced the engagement, and everyone danced.

"I have a ring on my hand," says Fadi, excited despite the fact that it's causing his finger to turn black. "It happens sometimes, people have allergies for silver. But, when I take it off I feel naked."

The engagement was a landmark for Fadi and Laila as a couple, as well.

"I felt a little bit nervous," says Fadi about his feelings before leaving for Chicago. "But after that, I just feel so good about it. I feel it in my stomach, my relationship with Laila feels real now. It's stronger, it's more comfortable now."

After the party, Fadi and Laila spent much of the week together. They walked and shopped and talked. "I felt I wanted to stay more," says Fadi.

When Fadi had to leave, Laila cried to be apart from him, and they immediately began planning Fadi's next trip to Chicago and Laila's first trip to Halifax.

The wedding is planned for June of 2013, when Laila will move to Halifax and find work as a dentist.

In Chicago, Fadi and Laila also talked about the risk of recessive genetic disorders in their children for the first time.

"So what do you think about this?" asked Laila.

"What do you mean?"

"If we know there's something going on, what are you gonna do?"

They talked about whether they thought that they could raise a child with a disability together. They talked about whether they wanted to take a test that would tell them whether or not they were likely to have a child with a disability, and decided not to.

"I told her that I don't care," says Fadi. "Whatever happens happens. And she said that she feels the same way, too. She said that she doesn't want this to be a reason for us not to be together."

Correction: The original text of this story misidentified some people who were named by sources interviewed for the story. In clearer words, for example, Lesley-Anne Doucet was called Lesley-Anne Bethune when the story was published. Minor changes to make for better identification were made May 7, 2012.

Sam Littlefair-Wallace is an amateur journalist with many handsome cousins.

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